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When Tori Geib learned that she had terminally ill metastatic breast cancer in 2016, the week of her 30th birthday, she was automatically booked to see a palliative care coach at the Center's comprehensive cancer center. Ohio State University in Columbus.
There, in addition to receiving a targeted therapeutic pill to slow the spread of cancer, she was offered a host of services that she said shaped her quality of life for the next three years: acupuncture, pastoral comfort, counseling in nutrition and pain expertise. control nausea and back pain as the cancer spread to the spine. She also saw a mental health counselor who helped her to accept the brutality of her diagnosis.
"The most important thing at the beginning is that you have to deal with the mourning of this life that you have just lost and the idea of your life. Your peers do not understand. I had to leave my chef position two years out of school, "says Geib, of Bellefontaine, Ohio. "When I learned that my cancer was not curable, I just told my palliative care doctor," If I do not live long, I want to be sure to live the best of my life. "
Geib has benefited from an upward trend in cancer treatment: simplifying as much as possible the treatment experience for more than 1.7 million Americans diagnosed with cancer each year.
Often referred to as palliative or integrative medicine, the holistic approach focuses on the emotional needs of patients and the physical symptoms, in addition to the treatment of the disease. In 2016, 1,831 US hospitals – about three-quarters – had a palliative care program, compared with less than a quarter in 2000, according to the Center for Advance Palliative Care.
While palliative care is often associated with terminal cases – and often confused with end-of-life palliative care – they are actually designed for patients with many types of serious illnesses, regardless of the expected lifespan.
This "comprehensive" care can encompass everything from mind-body practices, massages, stress management and symptoms to cognitive-behavioral therapy, to help patients cope with insomnia and to fear of cancer after treatment. As part of the growing recognition of the link between poor lifestyle factors and cancer, many centers also offer weight loss, alcohol and even exercise counseling services.
This is in addition to better anti-nausea medications and anti-cancer drugs, such as immunotherapies, which are easier on the body and do not cause hair loss or debilitating fatigue.
"I have patients who are really worried about the treatment. They tell me about a family member who was treated 10 years ago and the seriousness of the side effects and the difficulty in monitoring her, "says Nathan Handley, medical oncologist at Thomas Jefferson University in Philadelphia. . "I tell them we live in a different time. We have a lot more to offer. There are more options, more support and more hope. "
Oncologists have long recognized the importance of addressing the emotional concerns of patients since the 1970s, when the field of psycho-oncology was created. Studies have shown that almost a quarter of cancer patients suffer from depression and that cancer survivors are 50% more likely to commit suicide than the general population.
Luxury of major cancer centers, the mandate to offer such services took a new urgency in 2008 when the National Academy of Sciences released its historic report "Cancer Care for the Whole Patient", highlighting the The importance of emotional and social support for quality care for cancer. And in 2016, the Cancer Commission of the American College of American Surgeons decided that, to be accredited, cancer programs should ask patients, during a visit to their office, if they were experiencing distress emotional.
"We are becoming more aware that if we take into account what people are feeling, they will be better able to focus on treatment," says Jeremy Hirst, palliative psychiatrist at the Moores Cancer Center at San Diego Health University. . "We find that validating people's experiences by giving them the space to talk about the nightmare of a cancer diagnosis and how the experience steals so much of their lives helps their physical symptoms improve." . "
The focus on patient comfort and emotional state of mind is not just a humanitarian matter to reduce suffering. More and more evidence shows that this could prolong their survival.
A highly controversial 2010 study published in the New England Journal of Medicine found that patients with late-stage lung cancer who received early palliative care lived nearly three months longer than those who did not. did not have any. And a study published in 2017 in the Journal of the American Medical Association found that patients with metastatic cancer who answered weekly questions about their symptoms via an online tool that reported any serious problem to a nurse clinician had extended their median lives by five months.
In a new initiative, Jefferson's Sidney Kimmel Cancer Center's Handley team is implementing a model that communicates with patients via a third-party portal about their well-being. Not only do patients feel better, but treating early symptoms, such as dehydration with nausea or fever, also increases their chances of successful treatment, he said.
The focus on patients' quality of life is in stark contrast to the early days of cancer medicine, where physicians focused primarily on keeping patients alive and less on the physical and emotional toll of treatment.
"When the war on cancer was conceived in the 1950s, it was a war at all costs. We were so obsessed with victory that we accepted the idea that a patient invaded by chemotherapy, radiation and surgery was the price to pay to overcome the deadly disease, "says the oncologist. Siddhartha Mukherjee, author of The Emperor of All Diseases: Biography of Cancer. "Since that time things have changed considerably. We do not always give the maximum treatment. We manage symptoms early. As a community, we woke up and realized that we were not giving patients the psychological, spiritual and palliative care they needed.
Yet, there is still no consensus on services that should be considered "enjoyable to have" and on standard care to be provided in most cancer centers. Last summer, the American Society of Clinical Oncology cautiously approved guidelines for integrative therapies, including meditation, music therapy, and yoga, during and after breast cancer treatment, as a supplement. conventional therapies.
But at Houston's MD Anderson Cancer Center at the University of Texas, psychologist Lorenzo Cohen is attempting to advocate for routine screening of patients for cancer risk factors, including obesity and lifestyle habits. As part of a pilot program recently launched at the hospital's Breast Cancer Center, clinicians discuss their weight with the patient and ask them how much of the food they are eating from herbs, how much how often they exercise and how they handle stress.
"We have overwhelming data on the importance of these factors on outcomes for patients," said Cohen, MD Anderson's director of integrative medicine and co-author of "Anticancer Living: Transforming Your Life and Your Life". health with a mix of six. "What's new is studying how to incorporate this into clinical care. "
Despite the recent requirement of the Cancer Commission that one must ask cancer patients if they are suffering from distress, many cancer treatment centers do not have an effective system to refer patients to the appropriate services, "said Lidia Schapira, Oncologist, Director of the Cancer Survival Program at Stanford University Medical Center. They also can not guarantee that insurance will cover these services.
"The current billing system separates mental health and cancer services," she says. "Your cancer doctor might refer you to a psycho-oncology, but your insurance may not cover the mental health of this center."
Or, your insurer may not cover the services between and after treatment – when patients may fear returning to cancer or seeking nutritional advice to stay healthy, says Linda House, President of the Cancer Support Community.
In many cities, non-profit groups like his were left to fill the gaps.
"People are surviving longer and living better with their disease. We are now able to focus on all other issues, such as depression and anxiety, "said House, whose organization organizes support groups, education sessions and social events for patients and their families in the United States, Canada, Israel, and Japan. "As an area, we need to realize that emotional support is as important as medical services and needs to be repaid."
For Geib, her palliative care physicians helped her to calm her back pain, which allowed her to stop walking without a cane. She also learned strategies for managing her anxiety about imaging exams every three months to see if her cancer had progressed – what counselors call "scanxiety."
"I've learned since everyone did not have access to this type of care, so I feel lucky," says Geib, now 33 years old. "Nobody knows how to fight cancer. They are here to help you adapt to a new normal and be present in daily life. "
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